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Whole body MRI will be performed in patients with neurofibromatosis Type 1

PURPOSE 1:

To determine the total tumor load (neurofibroma) and to diagnose plexiform neurofibromas or malignant peripheral nerve sheath tumors. All patients will be scanned two years after the baseline whole body MRI to investigate to investigate the changes of total tumor load.

Estimation of total tumor load and diagnosis of high-risk neurofibromas [ Time Frame: 1 month ]

Estimation of the total tumor load of neurofibromas with whole body MRI (head to knee). Diagnosis of high risk neurofibroma in the chest, abdomen, pelvis, and extremities with T2-weighted sequence and diffusion weighted sequence.

Secondary Outcome Measures:

To diagnose high-risk neurofibroma [ Time Frame: 2 months ]

Some patients with neurofibromatosis have lesions, pre-malignant or malignant neurofibromas. Additional imaging (PET-CT), a biopsy or surgical treatment is necessary in combination with histopathology of the lesion.

All patients diagnosed with neurofibromatosis type 1. GROUP 1:ADDITIONAL IMAGING OR SURGERY There will be patients with high-risk neurofibromas (potential malignant). These patients will underwent additional examinations or surgery (outside this study). Follow-up MRI within 2 years (study MRI )

GROUP 2:

No suspicious lesions at MRI. Follow-up within 2 years(Study MRI).

Other: Additional imaging or surgery

No specific intervention is necessary. If a suspicious lesion is diagnosed on MRI, further investigation will be planned (PET-CT or surgery - biopsy)

Eligibility

Information from the National Library of Medicine

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Ages Eligible for Study:

6 Years to 50 Years (Child, Adult)

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

No

Sampling Method:

Non-Probability Sample

Study Population

All patients with a clinically proven neurofibromatosis type 1 can be included.

Criteria

Inclusion Criteria:

Patients with neurofibromatosis type 1, between 6 and 50 years old

Exclusion Criteria:

Patients who are not allowed to be scanned on MRI (contra-indications: pacemaker ed.)

Contacts and Locations

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01777451